Autism, what next?

After my son was diagnosed with autism, I was told I’d receive the report in an email. That was it. I don’t know exactly what I had imagined in my head—maybe a guide, some direction, or at least a pamphlet explaining what to do next. And suddenly, I realised how much I didn’t know—how much I wish I had known. 

 I had no idea the financial strain would be so heavy. The therapies that would help my little boy feel less distressed were so expensive, not to mention the fuel just to get there. I didn’t expect that caring for him would mean I couldn’t work as much, couldn’t earn enough to stay afloat. 

I didn’t know that it would mean no holidays, that I would barely cover rent, that “living paycheck to paycheck” would be a luxury compared to what we actually face—living day to day, never knowing how we’ll make it to tomorrow. I wake up every morning with that weight, wondering how my boys and I will get through another day.

The isolation hit hard, too. People would tell me they understood why I couldn’t stay longer at social events, why I had to leave early, but I know they judged me behind my back. I couldn’t just visit family hours away—that kind of change in routine would be too much for my son.Slowly, I found myself pulling back, feeling more and more alone. 

And then there was the strain on my relationship. We couldn’t survive it. The pressure, the exhaustion—it was too much. 

Through it all, I’ve neglected myself—both physically and mentally. There’s no time, no space left for me. And I never saw any of this coming.

The In-between

Before my little man's diagnosis, being my third, it was clear that his mind worked differently from his 2 older brothers. He never babbled, he never played, he was extremely delayed in all milestones (he didn't walk until after age 2) and the thing that really worried me was he never seemed happy. I later learnt that the term for that in the neurodiverse world is "limited affect"

The only time he ever "played" wasn’t really playing in the way most people think. Instead of engaging in imaginative games or interacting with toys in a typical way, he would meticulously line things up, organising them with precise care. Sometimes, it was by size, but more often, it was by color. He’d spend hours sorting and arranging, completely absorbed in the patterns he was creating. But this wasn’t just a harmless quirk. If even one item was slightly out of place, or if the colours weren’t perfectly aligned, it would trigger a massive outburst. His frustration would be overwhelming, like the world was suddenly out of control for him, and nothing could calm him down until everything was "just right" again. It became less about playing and more about maintaining order in a way that seemed to bring him a sense of peace, but only if it was perfect.

I was constantly shut down by medical professionals, I was told things like he "was just a colicky baby would grow out of it", "he was just a lazy toddler" or that I was worrying too much. It took so much mental energy and work to find a doctor that finally believed me. I asked him to listen to my concerns, do a health check up and if everything was fine I would shut up. They found alot including physically.

This in-between time was excruciating both physically (he was still sleeping like a newborn up until 4) and mentally. My mind was in such a bad place. Trying to juggle my toddler, 2 older boys (trying to give them the attention they also deserved), working, managing a household and trying to find time to fill my own cup was impossible. COVID became a thing and life with no support was even more lonely. 

From the Beginning

 From the beginning...

I've never been one to trust my gut instinct, well maybe I should correct myself and say I've never listened to my gut instinct, it probably explains why my relationships and life itself has always been turbulent and full of bad decisions but when I was pregnant with my youngest, there was a feeling I could not shake, I kept seeing hearses everywhere too (which I rarely see), it gave me the most haunting gut feeling. I told myself that I was being paranoid. Everyone around me told me it was in my head. Still to this day I wonder if my stress levels in pregnancy caused something. The level of guilt that causes me itself is off the charts.

5 weeks before my booked in c-section, my first week off work, watching a movie with my 5 & 6 year olds and being severely constipated with my pains getting worse, I decided to prove my sons dad wrong. It was not early labour and infact just poo. I was wrong, it was not a poo.

And so began the start of my journey. Whilst obviously there were no signs that my newborn was autistic, there were signs that things were different. His first 2 weeks of his life were spent tube fed with an inability to suck and on medication.

The next 12 months were full of sleepless nights (he only started sleeping through the night at 4 years old) and an extremely colicky baby covered in excema.

The Bear Named Bear

 What's the go with the Bear?

When my youngest (neurodiverse little man) decided to claim my eldest sons, decade old, soft toy bear, I casually asked him what he was going to name him. The look I got was priceless. A side eye was given as if I had just asked the most stupid question in the world, followed by a simple one worded response .... Bear

Bear symbolises alot:

The idea of being straight to the point, the way my little guy is.
A security item.
A way my ND son tells me he loves me as he does not discuss feelings.
A conversation starter.
A communication device (believe it not)

Bear unexpectedly plays a big part in my life.



This blog explores the emotional and physical challenges parents face when raising an autistic child. Topics include managing self-care, finding support, dealing with guilt, and overcoming burnout. It offers my personal journey finding coping strategies and offering advice for parents also trying to navigate these tough moments while caring for their own well-being.

It is raw, honest, triggering and eye-opening for some, but it is my real life. I dont have a degree, this is lived experience.